Journalist Jean Heller reported that an agency of the U.S. government was still conducting a study, begun forty years earlier, to determine the effects of untreated syphilis in African American men without informing them about either their disease or the nature of the study. In response, the U.S. Congress enacted a law that mandated institutional review boards to supervise and approve all federally funded projects using human subjects. Also, all federal agencies established strict rules on informed consent.
The Tuskegee syphilis study had its beginnings in 1929, when the U.S. Public Health Service (PHS) was awarded a Julius Rosenwald Foundation grant to investigate the prevalence of syphilis among African Americans and to explore the possibilities of mass treatment. Taliaferro Clark, head of the venereal (sexually transmitted) disease division of the PHS, was fascinated by a 1928 Norwegian study that included 473 patients with syphilis who had the disease for more than twenty years without treatment. The study found that 27.9 percent of the patients had undergone a “spontaneous cure.” The director of the study, Emil Bruusgaard, estimated that 70 percent of all syphilitics would never suffer serious inconvenience from the disease, although he warned about the dangers of untreated syphilis for the other 30 percent.
A staffer with the U.S. Public Health Service draws blood from a participant in the Tuskegee Syphilis Study in this undated photograph.
Because the Norwegian study had used only white patients, Clark and his associates wanted to compare its results with a study using patients of African ancestry. Their initial goal was to determine whether the disease had different effects on the two racial groups. After conducting a survey of several Alabama counties, they chose Macon County because it had the largest concentration of syphilitics. No funds were available for treating the patients. Apparently researchers did not consider the lack of treatment to be unethical, in large part because the best treatments of the time, Salvarsan and other arsenic-derived drugs, were frequently ineffective and had extreme side effects. Also, the treatments were so expensive that they were unaffordable for an estimated 80 percent of the American people during the Great Depression. From the perspective of the PHS, the study would neither harm nor benefit the patients, and they hoped it would result in significant medical knowledge.
Beginning in 1932, the study examined the condition of 412 men who had the disease, as well as another 204 unaffected men who served as study controls. Physicians at the Tuskegee Institute at Tuskegee University in Alabama, and other local physicians, cooperated with the PHS in the study. An African American nurse, Eunice Rivers, was especially active in recruiting the men and transporting them to see the cooperating physicians. Most of the men were sharecroppers; all were quite poor and uneducated. To encourage participation, they were promised free meals, a $50 death benefit, as well as experimental treatment for “bad blood,” which referred to a variety of medical conditions in the local dialect. At that time, the procedures used in the study did not directly violate any established ethical principles of informed consent, although most physicians recognized an obligation for truth-telling. PHS officials originally planned for the study to continue for a year or less, but they later decided to continue it to trace the long-term consequences of the disease.
Even after the
Peter Buxton, a PHS researcher, was distraught when he read about the Tuskegee study. On November 6, 1966, he filed an official protest, asserting that the study was similar to the medical experiments of the Nazis that were condemned at the Nuremberg Trials after World War II. PHS physicians attempted but failed to convince Buxton that his concerns were unjustified. Two years later, Buxton, now a lawyer, wrote a stronger protest, warning about “the thinking of Negro militants that Negroes have long been used for medical experiments.” Responding to the second protest, the PHS in 1970 cooperated with the U.S. Centers for Disease Control and Prevention (CDC) in holding a blue-ribbon panel. Only one of the participants argued that the surviving patients should be given treatment. The majority of the panelists, however, concluded that treatment would not help the patients and that continuation of the study was warranted.
Angry about the panel’s decision, Buxton leaked information about the Tuskegee study to Edith Lederer, a journalist in San Francisco, California. Lederer’s supervisors insisted on research by a journalist in the East, so she contacted her friend, Associated Press (AP) reporter Jean Heller. Heller interviewed CDC officials, who provided her with frank and straightforward information. Her article, “Syphilis Patients Died Untreated,” was picked up by the Washington Evening Star and published on July 25, revealing the study to the general public. The story broke nationally the following day.
Although overshadowed by events relating to that year’s presidential election, Heller’s story attracted nationwide attention. Merlin Duval, an assistant secretary at the U.S. Department of Health, Education, and Welfare (HEW; now Health and Human Services), was “shocked and horrified” to learn of the Tuskegee study, and he appointed an ad hoc panel to investigate the matter. Based on the panel’s recommendation, HEW ordered an end to the study on November 16, 1972. A few months later, Democratic U.S. senator
The federal government, however, did not voluntarily offer monetary compensation to the surviving patients. In July, 1973, African American lawyer Fred Gray filed a lawsuit for $1.8 billion against the government. In his brief, Gray asserted that the government had failed to treat the men, had not informed them that they had syphilis, had led them to think they were receiving appropriate medical treatment, and had failed to obtain their consent to be part of a study. Two years later, Gray and the government agreed on an out-of-court settlement for $10 million, including $37,500 for each living syphilitic and $16,000 for each person used as a control.
Reacting to the Tuskegee study, HEW reviewed its regulations on human experimentation and made fundamental changes in its procedures. The study was one of the major reasons that Congress enacted the National Research Act of
As early as 1965, the Tuskegee Institute became a national historic landmark. In 1997, U.S. president
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Gray, Fred D. The Tuskegee Syphilis Study: The Real Story and Beyond. Montgomery, Ala.: NewSouth Books, 1998. A look at the study by the prominent civil rights lawyer who represented the patients in a successful suit against the government. -
Jones, James H. Bad Blood: The Tuskegee Syphilis Experiment. 1981. New ed. New York: Free Press, 1993. A pioneering work that is highly critical of PHS doctors, based on exhaustive archival research that was utilized by Fred D. Gray for his book and by subsequent writers. -
Marks, Harry M. The Progress of Experiment: Science and Therapeutic Reform in the United States, 1900-1990. New York: Cambridge University Press, 1997. Includes much information about the historical development of ethical standards in medicine and science and informed consent. -
Reverby, Susan M. “More than Fact and Fiction: Cultural Memory and the Tuskegee Syphilis Study.” Hastings Center Report 31 (September-October, 2001): 22-28. Focusing on how preconceptions have influenced memories and interpretations, Reverby acknowledges the limitations of treatment before the late 1940’s and observes that some patients eventually received treatment. -
_______, ed. Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill: University of North Carolina Press, 2000. Excellent collection of scholarly writings, some of which argue that the study was based on blatant racism, while others insist that no intentional harm was done to the patients. -
Uschan, Michael V. Forty Years of Medical Racism: The Tuskegee Experiments. Farmington Hills, Mich.: Lucent Books, 2005. A relatively short account that is primarily for young readers, twelve years and older. Part of the Lucent Library of Black History series. -
Washington, Harriet. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Doubleday, 2007. A scholarly but somewhat sensationalized history about how African Americans have been studied by the medical profession without their knowledge or consent.
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